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» LymeNet Flash » Questions and Discussion » Medical Questions » 10 Broken Vertebrae! *Update 6/8* (Page 2)

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Author Topic: 10 Broken Vertebrae! *Update 6/8*
Sammi
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sammy, how are you doing? I hope you have your test results and a plan of action.
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sammy
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*Update 3/26/13*

I will go for my DEXA scan later this morning.

Then have my IVIG treatment in the afternoon. It will be a busy day for me.

Tomorrow at 2pm is my appt with the neurosurgeon. I am excited and nervous. I really don't want surgery but I can't handle the excruciating constant pain. Oh, I hope and pray that he can fix my back, make it good as new.

Thank you for continuing to care and pray with me friends. Please pray that these DEXA scan results will be good enough for the surgeon to safely operate to fix my spine. That God will bless and lead my doctors as they come up with their treatment plans for me.

Hugs, thank you LN friends [Smile] I don't know what I would do without you!

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Dekrator48
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Thanks for the update, sammi.

I am praying for you, dear friend, that everything works out perfectly for you, and your pain resolves.

Huge hugs!! Just meditate on Jesus, Jesus, Jesus, when you are nervous. He will be there holding your hand.

Will wait to hear how things go.


[group hug] [group hug] [group hug]

--------------------
The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.

"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11

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Lymetoo
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Praying for you sammy!! Keep us posted!

[group hug]

--------------------
--Lymetutu--
Opinions, not medical advice!

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lyme in Putnam
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Prayers up.

--------------------
He took u to it, He'll you through

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Sammi
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I am praying that all goes well.

When you can, let us know how everything goes.

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MorningSong
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Dear Sammy,

I'm sorry for all you have been going through. Not able to be on Lymenet that often. Just wanted to let you know you have been in my prayers.

With love and prayers,
Morningsong

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Lymetoo
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update?

--------------------
--Lymetutu--
Opinions, not medical advice!

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susank
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Sammy - thinking of you - as I have been past days. Prayers for you from me also.

--------------------
Pos.Bb culture 2012
Labcorp - no bands ever
Igenex - Neg. 4 times
With overall bands:
IGM 18,28,41,66 IND: 23-25,34,39
IGG 41,58 IND: 39
Bart H IGG 40

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AuntyLynn
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Sammy - I'm praying for you too!

But I have three questions ...

1. Why are you waiting around for a neurologist when you should be seeing an Orthopedic Surgeon?

2. Why in heck are they making you go out for a DEXA scan when you shouldn't even be standing? Most hospitals have them on site.

3. Why don't you just call an AMBULANCE to take you to the next appointment? If you get into another coughing/Nausea fit on the back seat of a car ... you could be paralyzed for life. In an ambulance, at least you'd be prone.

Sometimes pain can interfere with logic!

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Dogsandcats
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I have been scanning these posts and am amazed at our medical system. I don't know why.

You poor baby, I want to fly to where ever you are and smack some doctors around - wouldn't do any good for you, but sure would feel good for all of us on the board.

Keep you eyes on the Lord, as He is the great Physician. When pain overwhelms or fear creeps in - look to God. I don't know why you are going thru this - but I know God is with you. This may seem sappy considering how much pain you are in and all the nut jobs you are dealing with - but rest in His arms.

Sometimes I find myself holding my breath because the pain is so bad. Breathe out and take the pills for pain.

God bless you and I will be in prayer for you! Praying for a miracle ...

--------------------
God will prepare everything for our perfect happiness in heaven, and if it takes my dog being there, I believe he'll be there.

Billy Graham

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aperture
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Sammy,

We are all praying for a positive Dr visit for you today.

--------------------
aperture

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RZR
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Sammy,

We are all praying for you. So sorry you are going through this.

I would be glad to help dogsandcats smack some doctors around.....I have bart rage anyway and it would feel make me feel great!

--------------------
Tick bite May 2009
Diagnosed June 2009

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fflutterby
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Poor Dear Sammy, I do pray that God will lead all of your Doctors to heal you and relieve you of this. May the healing hand of God guide their every thought and move pertaining to your treatment.

--------------------
Psalm 46 1 God is our refuge and strength

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sammy
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*Update 3/27/12*

Oh friends, my appt did not go well. Not at all.

The neurosurgeon said that with the "7 vertebral body compression fractures" (yes, you caught that, I did fracture another one...) surgery would be too risky because I could potentially develop a bone infection due to my primary immune deficiency.

I got the distinct feeling that he simply did not want to be liable for treating me because I was a complex patient with the immune deficiency and the multiple compression fractures.

I asked if he would have treated me differently if I did not have the immune deficiency and he hesitated for several seconds then said "well... no...". That long hesitation was a big "yes" to me.

He said that my DEXA scan results were -3. So I do have osteoporosis. Which again I was told is unusual at my age.

I broke down and cried in his office because I have been waiting so long for this appt, waiting to hear his treatment plan.

When I learned that there was no treatment plan, my hopes were crushed. I told him that I can't handle the pain. It is truly unbearable. It's excruciating. I asked, what am I supposed to do? How long will this pain last?

He told me that I should restrict my movement and stick with bed rest. He gave me a prescription for a back brace to wear when I have to be up. Said that will take the pressure off my back and support it. Said the pain will gradually get better but it may never go away, I will "get used to it".

I just continued to cry. I tried to ask a few more questions. Enough to see that he was clearly uncompassionate, totally unempathetic. I cried all the way out of the office. I couldn't help it.

You probably would too if you were in this much pain and had been waiting for almost 2 months for someone to take your pain seriously and treat you!

This doctor that I saw is a part of a very well known and highly respected neuro group.

I'm stuck in a nightmare and I really need a miracle.

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seekhelp
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Sammy, I am SO sorry to hear this. I can't imagine. [Frown] That is just heartless of any physician.

I know of a orthopaedic surgeon in Michigan who is one of the best in the country. He is not easy to get into, but you could try calling. He has quite a reputation and works on a lot of sports athletes.

PM me if you want the name/number.

I would never give up in that much pain. As many others said, I wouldn't hesitate to pop into the ER room and cause an uproar.

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Sammi
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sammy, I am truly flabbergasted about this doctor's behavior. I cannot believe he expects you to live with the pain and just get used to it! This is unacceptable.

As so many of us here know, supposedly respected doctors are not always so. You definitely need to get another opinion.

I am very sorry this happened. I am also very sorry that you have an additional fracture.

Have you told your Lyme doctor what is going on?

There has got to be a way for you to get the help you need. Can your mom or someone nearby make some calls for you?

Prayers continue. Hang in there.

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Razzle
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Sammy,

Your situation is beyond imaginable. My prayers are with you.

I just sent you a PM with some information. I hope it helps.

Take care,

--------------------
-Razzle
Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs.

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fflutterby
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Don't give up Sammy, there are other Dr's out there. I am so sorry you are in so much pain. I will continue to pray for your miracle.

--------------------
Psalm 46 1 God is our refuge and strength

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sammy
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No, I have not told my LLMD yet. I was going to call him after I saw the neurosurgeon and had more information about the treatment plan. But there is really no treatment plan.

Right now I just have a diagnosis and terrible horrible unbearable pain.

I know I need to tell my LLMD because they are going to be receiving copies of a bunch of labs results that my rheumatologist and PCP ordered in an effort to try to r/o what is causing my osteoporosis.

I feel like I don't know what to tell my LLMD. He's in another state. I wish I lived closer to his office so that I could see him in times like this.

I cannot see an orthopedic surgeon because I've been told that they do not fix this type of fracture. Originally I had a referral to an ortho spine surgeon (supposedly very good too). When I told them my diagnosis the doctor said that I needed to see a neurosurgeon.

I've made an appt to see an Interventional Radiologist (Dr.T) for a consult for thursday afternoon. I know that they too can perform the khyphoplasty using fluoroscopy to repair the vertebral body compression fractures. I really hope and pray that this doctor will accept me as his patient and treat me.

Thanks for praying for me friends.

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pme
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I can't evn imagine how frustrated ou are. Someone has to be able to help you I am just sick for you reading this. Praying for quick miracles for you.

--------------------
Tick bite in 2006, bullseye rash, treated with 2 rounds of 2 weeks of doxy. (once in 2006, once in 2009)
Dx with chronic Lyme May 2011.
LLMD April 2012, Treating with omnicef/zith
Lots of supplements!

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Sammi
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I would let your LLMD know even though the doctor is out of state. He/she may have some suggestions.

I hope that Dr. T. is caring and that he can help you when you see him on Thursday.

Keep us posted sammy.

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Lymetoo
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OH Sammy... I am so so sorry to hear this! Call a pain management clinic ASAP.. after calling your LLMD.

[group hug]

--------------------
--Lymetutu--
Opinions, not medical advice!

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Dekrator48
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sammy,

I am so very sorry for all that you are going through.

I am fervently praying for God to have mercy on you, dear friend.

Lord, please guide sammy to all the right people that can help her in all the ways that she needs.

I agree, that it sounds like you need very good pain management in the interim.

If there is anything at all that I can do for you (besides praying), please pm me.

I am adding you to a prayer list right now.

I am praying and praying and praying..... [bow]

--------------------
The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.

"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11

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sparkle7
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Sorry, sammy. I don't really know anything about this illness but I did find this article -

Osteoporosis in Men1
John P. Bilezikian
- Author Affiliations

Departments of Medicine and Pharmacology, Columbia University College of Physicians and Surgeons, New York, New York 10032

http://jcem.endojournals.org/content/84/10/3431.full

---

I don't think surgery is an effective approach for this illness in any case. I'm so sorry you are in pain.

Maybe you could try a pain management clinic?

I also find these CDs are helpful -

http://store.hemisyncforyou.com/search.php?search_query=pain&x=0&y=0

All of this takes time to figure out. I think you could try to get the pain under some control & then try to think about it & study. It's hard to think when the pain level is high.

It's really hard to find a good doctor. If you could get some control over the pain - it would be a big help. Then, you could focus on trying to get some kind of cure or treatment plan.

Hang in there... You never know what tomorrow will bring.

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sammy
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Here is more information about the khyphoplasty procedure and also a video that explains it:

http://www.daytonir.com/BackPain/RelatedProcedures/VertebroplastyKhyphoplasty.aspx

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TF
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Sammy, it is my understanding that kyphoplasty is what is done in these cases.

I have friends who have had it. They were in extreme pain with multiple fractures like you. (None of them had lyme disease.)

They thought the kyphoplasty would immediately stop the pain, but it doesn't. But, over a period of months after getting the kyphoplasty, the pain does decrease considerably. For some people, it is just mild pain after the kypho. The pain is no big deal anymore.

So, just wanted to say that I never heard of surgery for your condition, only kyphoplasty.

Maybe I am not up on the latest. Please get the kyphoplasty as soon as you can schedule it.

I will be praying for you. I have seen friends with multiple breaks like you, taken them to an ortho, then ortho said get kypho, taken then to the kypho, seen them get their lives back.

Then, I took them for Reclast infusions to work on getting the bone density to improve. You get one infusion per year.

They are out and about as before, enjoying themselves. That can be you also, dear one. That is my fervent prayer.

I guess you know that you have to avoid anything that jerks your back, make sure you don't fall, and things like that so that you don't get more fractures. They can happen very easily.

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susank
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Sammy - a thought - were you offered Pennsaid?
Topical Diclofenac? Rx. I have two friends that use it. They say it is miraculous against pain. One friend has an unoperable broken bone in her foot. Navicular bone I think. Nothing helped her. The Pennsaid has. I think it cannot be taken with oral pain meds. I think it comes in a gel. The original use for it was for arthritic knees (I think). But now doctors will prescribe it for other pain areas.

--------------------
Pos.Bb culture 2012
Labcorp - no bands ever
Igenex - Neg. 4 times
With overall bands:
IGM 18,28,41,66 IND: 23-25,34,39
IGG 41,58 IND: 39
Bart H IGG 40

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sparkle7
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http://www.forbes.com/2009/08/05/vertebroplasty-healthcare-reform-business-healthcare-backpain.html

Effectiveness
Common Spine Surgery Shows No Benefit
Robert Langreth, 08.05.09, 05:00 PM EDT
The findings will provide ammunition to those pushing for more ''comparative effectiveness'' studies as part of health care reform.


An expensive and common procedure treating back pain from osteoporosis turns out to be ineffective, no better than a fake surgery, two major studies have found.

Called vertebroplasty, the procedure involves injecting surgical cement into the vertebrae of patients to relieve pain from spinal fractures due to osteoporosis. Some 750,000 Americans get these fractures each year. Vertebroplasty and a related procedure called kyphoplasty have soared in popularity in recent years after doctors reported apparently miraculous results after trying it on small numbers of patients.


But early studies reporting positive results for the vertebroplasty procedure did not have control groups, making it unclear whether the purported benefits were simply due to the placebo effect or the natural tendency of chronic pain to subside over time.

The new studies, published in the New England Journal of Medicine today, tested vertebroplasty in a far more rigorous way. They randomly assigned patients to get either vertebroplasty or a fake procedure in which patients were injected with local anesthetic but no cement. Researchers followed patients for a few months to see if there was any difference in pain or functioning.

The results? "People who got a fake procedure did just as well as people who got the real thing," says back pain researcher Richard Deyo of Oregon Health and Science University, who was not involved in either study. Both groups improved, but the placebo patients improved just as much as those who got the real thing.

"It is absolutely shocking," says Mayo Clinic interventional neuroradiologist David Kallmes, who led one of the studies in conjunction with researchers at the University of Washington. "Vertebroplasty as currently practiced in this country and around the world doesn't seem to work."

Kallmes did the study because he always though the results reported for vertebroplasty seemed too good to be true--everyone got good results no matter how much cement was injected or what technique was used. And the mechanism through which vertebroplasty provided pain relief was a bit of a mystery. He figured if vertebroplasty was as good as promised, it would be easy to prove. He never expected results as stone cold negative as they were.

Kallmes says it is too early "to kill the procedure" but that doctors need to stop doing it routinely outside research trials. Some researchers went further.

"I don't think they should be done" any more outside of research studies, said Monash University rheumatologist Rachelle Buchbinder, who led the second study, done in Australia. "There are some risks, and we did not demonstrate any benefits."

Side effects of vertebroplasty can include cement leakage and the possibility that it could increase the risk of future fractures.

Johnson & Johnson ( JNJ - news - people ) and Stryker are among the companies that make materials using vertebroplasty.

Each year Medicare pays for roughly 40,000 vertebroplasty procedures at a cost of $3,000 or more, says Dartmouth-Hitchcock Medical Center orthopedic surgeon James Weinstein. If the new studies' findings are correct, much of that money has been wasted. He estimates that at least that many more expensive kyphoplasty procedures are done.

They findings are likely to provide ammunition to legislators and doctors pushing for more "comparative effectiveness" studies to be done as part of health care reform. The goal is to get better data on which medical procedures and devices provide value for the money. "The results are a very big deal for all of health care," says Dartmouth's Weinstein. This is what the president is asking us to do--find the answer and pay for value. If things work lets pay for it, if it doesn't, lets not."

Researchers said the negative vertebroplasty findings raise questions about the effectiveness of a related procedure called kyphoplasty, in which the cement is injected after a small balloon is inflated to restore the shape of the broken vertebra. In 2007, device maker Medtronic ( MDT - news - people ) spent $3.9 billion to buy the company that makes kits used to do the procedure.

"There is no plausible reason why it would work where vertebroplasty doesn't work," said Buchbinder, who calls for blinded trials looking at the benefits of kyphoplasty.

Adds University of Washington neuroradiologist Jeffrey Jarvik, who worked on the American trial: "It absolutely calls into question the benefit of kyphoplasty as well There is no strong evidence" that kyphoplasty is better, even though it costs more.

Medtronic says kyphoplasty is different from vertebroplasty; among other things, it aims to not just relieve pain but to restore lost height. It points to a 300-patient trial published in the Lancet this year that found kyphoplasty was better than nonsurgical care for relieving spine fracture pain and improving function.

But that trial was not blinded--patients knew which treatment group they were in. This is an issue because the mere knowledge you are getting the latest in high-tech procedures can make you feel better. Studies have found that fake devices produce bigger placebo effects than placebo pills.

Medtronic argues that a sham surgery trial for kyphoplasty is not needed because the Lancet trials followed patients for a full year, and that a placebo effect would be unlikely to persist for this long. "Placebo effects have never been shown to last as long as one year," the company said in a statement.

Vertebroplasty was first pioneered in France and has been done in the U.S. since researchers at the University of Virginia reported good results in the 1990s. "It is a very simple procedure to do," says Kallmes. "Everyone picked up on it and stared doing it. Kyphoplasty, which adds in the balloon, became popular more recently.

But the new studies testing vertebroplasty's efficacy took years to perform because doctors were reluctant to enroll patients. They were convinced that vertebroplasty worked. The Mayo Clinic/University of Washington trial had to expand to locations worldwide to attract enough patients. It eventually got 131 patients to agree. The Australia trial only enrolled 78 participants, far less than originally planned.

Some doctors even said the trials were unethical. One 2005 editorial in the Journal of Neuroradiology predicted that a randomized trial of vertebroplasty "would almost assuredly merely confirm the data that we already have" and thus "does not seem necessary or ethically justifiable."

Patients may still ask for vertebroplasty no matter what the results show. Sister Rogene Fox, an 81-year-old nun at Assisi Heights convent in Minnesota, was in the placebo group of the Mayo Clinic study after getting a painful vertebra fracture in 2007.

The pain went away 10 weeks after getting the placebo surgery, she says. This year, when she had a second vertebral fracture, she went back to get the real thing. Her pain went away within 10 days. "For me it was better, because within 10 days to two weeks my pain was considerably relieved. I would go back for another one," she says.

-----

Sorry about this... I don't mean to be a "devil's advocate". I've been around for a while & I've seen all kinds of "stuff". You have to look for every angle & study things. I wasted alot of time when I didn't... Just from my own experience.

The problem is that these doctors get paid for doing "procedures". It's based on capitalism - not healing... It's a bad model for medicine. I could go on for days but I'll spare you.

Look into everything thoroughly before you make any decisions.

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Robin123
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Ugh - I just read this for the first time - so sorry you are going through all this -

My first thought: can you do some investigation around the osteoporosis issue to strengthen your bones?

Second thought - look into a PEMF machine - pulsed electromagnetic frequency machine - it can work wonders with healing the body - I witnessed a lot of people using it who had all kinds of pain conditions and doing better from it.

It's a small box that emits electromagnetic pulses in a white coil that we hold next to the body.

Chiropractors and physical therapists can sometimes have the machines.

At least, take a little time to read the literature about it and see what you think re your situation - I'd be looking for any testimonials that matched what you're going through.

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Catgirl
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quote:
Originally posted by TF:
Sammy, it is my understanding that kyphoplasty is what is done in these cases.

I have friends who have had it. They were in extreme pain with multiple fractures like you. (None of them had lyme disease.)

They thought the kyphoplasty would immediately stop the pain, but it doesn't. But, over a period of months after getting the kyphoplasty, the pain does decrease considerably. For some people, it is just mild pain after the kypho. The pain is no big deal anymore.

So, just wanted to say that I never heard of surgery for your condition, only kyphoplasty.

Maybe I am not up on the latest. Please get the kyphoplasty as soon as you can schedule it.

I will be praying for you. I have seen friends with multiple breaks like you, taken them to an ortho, then ortho said get kypho, taken then to the kypho, seen them get their lives back.

Then, I took them for Reclast infusions to work on getting the bone density to improve. You get one infusion per year.


Sammy, go for it, AND tell your LLMD asap. Seriously, make the call. Lyme is multiple chronic stuff that the LLMDs need to be aware of to help guide you.

--------------------
--Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together).

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poppy
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Alternatives are described at Dr. Mercola's website, do a search for the word osteoporosis, if you are interested.

Also, here is something about strontium for osteoporosis.

http://tiny.cc/r6vvbw

Not recommending any of this, just making it available, since you already know the mainstream thinking on this subject.

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sammy
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I did contact my LLMD's office yesterday. Got a call back this morning. The nurse simply said that I could ask my rheumatologist for Forteo to treat the osteoporosis. Also make sure that I'm getting enough calcium and vit D in my diet. That's it.

Again, wish I lived close enough that I could make an appt to go and talk with the LLMD myself. I always feel like important information gets lost when you try to pass messages through busy office staff. And I believe that my LLMD's office is excellent. They are super hard working and they truly care...

This is just a difficult time for me.

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AuntyLynn
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Nutritional aids you can start right away:

Cod Liver Oil (NATURAL VITAMIN D with A with Essential Fatty Acids) I like Carlson Brand in green glass bottle - superior to others and very light taste.

YOUR BODY CAN NOT ABSORB CALCIUM WITHOUT FAT OR VITAMIN D!
(This is why skim milk & "low fat" dairy foods are a health scam and a waste of money!)

PLUS -
GET SOME SUNSHINE ON YOUR BARE SKIN!
(SKIP the sunblock!) This is the BEST form of Vitamin D! The kind your body makes on its own with sunlight exposure! Do NOT wash with soap for at least a couple of hours after sunbathing.

Calcium supplements
(Oyster Cal IS TOPS if you can find it! Lays down very quickly and will make your teeth pearly white too!)

Include calcium rich foods - not just dairy but seafood (like shrimp), CABBAGE & leafy greens.

Magnesium Citrate (take half as much as Calcium)

PROTEIN (eat extra! 60-80 gms per day. 1 Egg = 10 gm.)

Brazil Nuts (2 nuts per day = MDR for Selenium, which is also essential for bone growth)

The sooner you can lay down new bone the sooner your pain will diminish!

Follow the doc's advice to stay horizontal (as much as possible) on a hard bed or the floor: and use the back brace whenever you stand up!

You wouldn't walk around on a broken leg without a cast would you? The brace is the "cast" for your back!

Good luck, Hon! [kiss]

[ 03-28-2012, 03:07 PM: Message edited by: AuntyLynn ]

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AuntyLynn
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Oh and BTW, BEWARE of pharmaceutical "osteoporosis" drugs!

Studies have proven they make bone that is BRITTLE and prone to fracture!

There is/was a "class action" lawsuit against the leading brand, because it was making women lose JAW BONE and teeth!

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poppy
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Aunty - that was one of the things mentioned in a Mercola article. The osteo drugs are problematic.
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Robin123
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The PEMF machine is a serious suggestion - they're healing bones, etc with it -
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poppy
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Here is another possible cause of osteoporosis.

http://en.wikipedia.org/wiki/Primary_hyperparathyroidism

As we know, lyme can cause all sorts of hormone problems.

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DKat
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sammy, Just read your post through tears but can't can't get anything past this furry brain tonight to say, but wanted you to know I, too, am praying for you.

This will make an awesome testimony when you're on the other side. (I don't say this lightly...I know with your faith, one lousy doctor won't make you loose hope)

--------------------
Ecclesiastes 4:9-10 Two people are better off than one, for they can help each other succeed. If one person falls, the other can reach out and help.

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Carol in PA
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quote:
Originally posted by Robin123:

Second thought - look into a PEMF machine - pulsed electromagnetic frequency machine - it can work wonders with healing the body - I witnessed a lot of people using it who had all kinds of pain conditions and doing better from it.


Pulsed Electro Magnetic Fields influence cell behavior by inducing electrical changes around and within the cell.
Improved blood supply increases the oxygen pressure, activating and regenerating cells.

Improved calcium transport increases absorption of calcium in bones and improves the quality of cartilage in joints, decreasing pain dramatically.
Acute and even chronic pain -also caused by osteoporosis- may disappear completely.

Source:
http://altered-states.net/barry/newsletter495/index.htm

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sammy
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*Update 3/30/12*

I saw my new doctor yesterday. He was very knowledgable, very empathetic, very professional. I was impressed. It was such a relief.

He studied my MRI's, did not trust the reports sent by the other doctor. He actually examined my spine. The other doctor did not even look at my spine.

My new doctor even did an exam under fluoroscopy to determine the most acutely injured vertebrae. Since I have so many fractures he said that he cannot perform the vertebroplasty on all of them. He can only treat 2 or 3 of the most damaged that are likely causing the most pain and instability.

He explained, when they do the vertebroplasty, they push in the bone cement and the bone marrow gets pushed out of the bone...It is reabsorbed by the body. That is kind of an unsettling thought so I'd like to minimize the amount done there.

So as soon as my insurance authorizes, I'm going to get a bone scan. This will show areas of inflammation and help definitively show my doctor the vertebrae that need repaired the most right now.

Today I finally got fitted for my back brace so hopefully I won't be accidentally falling and breaking any more back bones. I fell the other day and hurt myself again. I've been trying to be careful, it's hard when you have neuro lyme with balance problems.

The back brace is really big and bulky. I didn't expect this. I've seen the ones that they use post-op on scoliosis kids, I guess that was more like what I was expecting. This is so big and thick it won't fit under any of my t-shirts. Oh well, guess I'm not going anywhere anyways.

If I can get the bone scan and the procedure authorized through my insurance company soon my doctor wants to do the vertebroplasty next week! Oh, that would be so great [Smile]

Friends, thank you all so much for you continued prayers, kind thoughts, suggestions, and words of encouragement. I appreciate you all so much!

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Dekrator48
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Dearest sammy,

I am so happy for you...that you got some good news!!

Your Dr sounds great! We know that all Dr's are not created equal..that's for sure.

I am praying fervently for you..that your insurance will authorize the bone scan immediately, that the scan will definitely show the areas that the Dr should repair now, that your surgery is scheduled asap, that your surgery is successful and you heal without complications.

I am also praying that you do not have any more injuries...and even that you find some really large T-shirts [Big Grin]

I really commend you for having such deep faith and a good attitude under such trying circumstances.

God is good and He will see you through all of this!

[group hug] [group hug] [group hug] [group hug] [group hug]

--------------------
The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.

"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11

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Sammi
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sammy, I am SO glad this doctor was kind and knowledgeable! He sounds like a keeper.

What a relief to have answers and a plan of action.

Is there any way to get a less bulky brace? I hope it will give you the support you need.

I hope everything goes smoothly with your insurance coverage, so you can get the procedure done as soon as possible.

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seekhelp
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I am very happy to hear this and wish you all the best. I hope he can help you a lot and relieve your suffering.
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TF
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So glad to hear this. An answer to our prayers!
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lpkayak
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good news. prayers.

--------------------
Lyme? Its complicated. Educate yourself.

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Silverwolf
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<<<<< sammy >>>>>,

TxCoord and I are continuing to pray for you!

I am glad you got in to a good and competent Doctor...

Will keep praying for things to work for your best,and that the treatments are approved for the surgery procedure... very soon!!!

Jus' Silverwolfi

--------------------
2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain.
[ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94
Diabetes*2 Dx 10/'08

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sammy
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My back brace doesn't fit very well. It seems to fit well if I stand still. When I move it shifts upward, the hard plastic rubs my IV port and rubs my neck. I try to push the brace down but it shifts right back up to my neck.

I wonder if maybe my brace is too big? I try to make it tighter but the shell won't let it get smaller. They offered me the option of a custom made orthotic or a pre made one yesterday. Now I'm wishing I would have gone with the custom made one even if it took several days to make. They thought that a pre made one would fit well since I had a "normal" looking body shape. I went with their expertise and since I wanted pain relief and stability the idea of having the brace immediately made me happy. Now I'm not so happy.

Anyone else every wear one of these TLSO braces? Have you had this shifting upward problem?

Of course when it moves it hits my port and now my port really hurts. So much so I actually had to deaccess to let it rest.

When the brace is out of position it also doesn't support my back right so my back doesn't feel better either. So I've decided it's not a good idea to wear this until I can get it adjusted next week.

Bummer.

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Sammi
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sammy, I am sorry you are having trouble with the brace. It definitely does not sound like it fits properly. I am sure it is hard to tell from just trying it briefly when you picked it up.

I would call the company and tell them this one is not working, and you need to get the one that is custom made.

In the meantime, is there something soft you can put under the brace where it is rubbing? Or maybe put a large Ace-bandage type bandage around it?

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Lymetoo
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So glad you are getting HELP!! Praise God!!

Call Monday about the brace.

--------------------
--Lymetutu--
Opinions, not medical advice!

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pug7
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You have the fractures because you have osteoporosis. Emergency care or surgery or neurology can not help osteoporosis. You need an endocrinologist who deals with bone metabolism.

If you take Reclast, be aware that Forteo will not work as well. Forteo is the strongest med, and with DEXA results of 3 and 7 fractures, you wouldmore than qualify.

Someone should be checking your parathyroid function as well, and many other tests (glandular calcium and D levels etc.).

One other caution: apparently, unfortunately, antibiotics can contribute to bone loss.

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Dogsandcats
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You poor sweetie. I would say I want to give you a hug, but I would probably break another one...

You are amazing, I would have been in so much pain and screaming- calling the docs every 5 minutes; the docs (or the nurses!) would have put me in a boat out to sea and waited for a group of sharks and dropped me overboard.


Did the doc give you anything for pain?

I know the prayers have helped you thru this and I ask that God continue to give you the wisdom to handle your decisions, the endurance to handle the pain and the strong faith to remind you every second you are in God's hands.

--------------------
God will prepare everything for our perfect happiness in heaven, and if it takes my dog being there, I believe he'll be there.

Billy Graham

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sammy
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Thanks friends.

Yes, I am now very aware that I have osteoporosis. My doctors have started to run some tests to try to find out why.

Here are a few results if you all are interested. Also had CBC and CMP done but I can't list everything here.

PTH (15-65) mine 13 Low
Magnesium serum (1.6-2.6) mine 2.5

Calcium, serum (8.7-10.2) mine 9.3
Calcium, urine states mine is normal at 8.2
Calcium, urine 24hr (100- 300.0) mine 287.0

Alkaline Phosphatase (25-150) mine 96
Alkaline Phosphatase liver fraction (26-86) mine 32
Alkaline Phosphatase bone fraction (11-68) mine 68
Alkaline Phosphatase Intestinal fraction (0-16) mine 0

TSH (0.45- 4.5) mine 2.5
Free T3 (2.0-4.4) mine 2.6
Free T4 (0.82-1.77) mine 0.98

I had my Vit D levels tested also, don't have those results yet. Last tests in December were 60, my doctor wanted me to stay at that level.

Any thoughts?

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Sammi
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I believe you have said you have hypothyroid symptoms before. Your thyroid results definitely have room to work with.

Everyone is different, but I feel best when my Free Ts are in the upper 1/3 of the range. I would feel terrible with a TSH of 2.5.

If you are having hypothyroid symptoms (although it can be hard to tell what is Lyme and what is thyroid), I suggest asking your doctor for a thyroid med increase.

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Lymetoo
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This may be something to research. My dr said he gives his osteoporosis patients Vit K2 and Vit D 3.. it reverses it.

Sounds too good to be true.. but...

here is dr mercola's take on it:

http://products.mercola.com/vitamin-k/

--------------------
--Lymetutu--
Opinions, not medical advice!

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pug7
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Your MD can explain. The PTH and the last two Alkaline Phosphatase would be the ones to ask about, as you can see.

Thyroid is probably fine. They do go up and down.

You have a severe situation and should not mess around with Vitamin K and D3, which will absolutely not address your situation.

I came back on here to tell you that you should not use the back brace much. Your muscles will get weak. Those braces are very uncomfortable and sometimes do more harm than good.

Your pain WILL get better but most likely won't go away. You will learn how to move, what to do and not do (beware of opening windows, bending and lifting, etc.).

This is not some kind of short-term emergency but a serious long-term problem, that can probably be addressed with Forteo (recombinant PTH)followed by either strontium or Reclast. Forteo can be taken for 2 years and is a daily injection. Good luck!

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pug7
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ps Biphosphanate drugs like Fosamax, Actonel, injected Reclast and Boniva, slow bone loss but don't rebuild bone. After several years, this can result in changes in bone microarchitecture that has resulted in some femur fractures. Osteoporosis doctors say that this only happens after 5 years. Many women don't want to take these meds for other reasons, mainly side effects.

Forteo, unlike biphosphanates, does build bone as well as slow loss. Rats got bone cancer on huge doses of Forteo, so use is limited to two years, but they are starting to loosen up on this since no humans have had any problems with cancer.

There is another drug out now called Prolia, but it affects the immune system, so anyone here on Lymenet probably wouldn't want to touch it.

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sammy
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*Update 4/16/12*

Hi friends,

I have good news, my insurance approved the kyphoplasty procedure to repair 2 of my fractured vertebrae. My doctor did a bone scan to compare with the MRI to help prioritize and see which of the fractures were the worst.

It is sad, as with Lyme, they are dictating care and not allowing my doctor to treat me as he believes is medically necessary.

My doctor said that with the insurance rules, if I'm still in significant pain after waiting 10days after the kyphoplasty of the first 2 vertebrae then he can apply for prior auth for repair of another 2 vertebtrae, until they are all repaired or denied.

So if you will, please pray for me. My kyphoplasty procedure is scheduled for this wednesday at 12:30pm. I am nervous because there are some risks, especially with having Lyme and the immune deficiency. But I feel like it is necessary. I can't even stand long enough to brush my teeth, the pain is overwhelming.

Thank you friends, words cannot express how much I appreciate your kind thoughts and prayers.

Hugs [Smile]

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katiebobatie
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oh gosh sammy, that sucks!

i am so sorry you're in so much pain... it sounds so awful!

you are always such a sweetheart and i hate that this is just one more thing for you to go through when you already have so much to deal with.

i will be praying for you... i hope you can find some relief soon.

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Dogsandcats
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I can't imagine your pain. I am pleased for you that things have moved forward.

After we have been with Lyme, ithink we get to know our bodies very well. We have to figure out so much on our own, we are more in tune. Keep praying and listen to your body and you will know what to do for sure.

God is always with you and will never leave you. Before I get knocked out I say that to myself and I drift off peacefully.

I will be praying for you. Thank you for the updates.

--------------------
God will prepare everything for our perfect happiness in heaven, and if it takes my dog being there, I believe he'll be there.

Billy Graham

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Rumigirl
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sammy, it is outrageous that your insurance company is holding you hostage like this!! Although it is surely too late for this round, you definitely need to file a complaint to your state Attorney General's Health Bureau about this on an emergency basis----this IS and emergency!!

The fact that they not only refused to authorize any more than 2 vertabrae, against your drs orders and your need is not something you should accept!!

And they took weeks to authorize it, which also is an outrage. Don't let them sacrifice you like this so they can make more money!! Your state AG's office can make them do what they should. You pay your policy every month, they need to hold up their end of the bargain.

I wish you had a fairy Godmother to handle this aspect for you (and to heal you while she's at it!).

We will be thinking of you and praying for you during the operation and healing.

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Sammi
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sammy, I am so glad you will be having the procedure and soon. It infuriates me that insurance will not allow your doctor to do what he feels you need.

I recommend contacting the CEO of your insurance company. Tell him the doctor has deemed the full procedure he wants to do as medically necessary. Explain that further complications could develop if you are not treated properly now.

I know you have limited energy, but maybe a family member or friend could make the call for you or write the letter?

How long is the procedure? I am praying that all goes well tomorrow and that you get lasting relief.

Keep us posted on how you are doing.

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Jennifer70
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praying for you [Frown]

--------------------
Psalm 119:50
My comfort in my suffering is this: Your promise preserves my life.

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RC1
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Sammy,
I just read your thread and it breaks my heart, I am crying right now. I am so sorry you are going through all this. I hope this procedure helps and will give you relief.

I don't know how you do it. Hang in there, you are a tough one.

R

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Dogsandcats
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Too bad we don't all live in the same area. We could make for a dynamic group going to doctor appointments with you....maybe the vision of that will give you a chuckle...all of our different personalities - checking the doc out, watching the nurses with every step....

we would be a group to contend with.... [Big Grin]

Can't be there - but we are in spirit and in prayer. God will always be with you.

--------------------
God will prepare everything for our perfect happiness in heaven, and if it takes my dog being there, I believe he'll be there.

Billy Graham

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Jane2904
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Good luck, Sammy. Praying for you.
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Lymetoo
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quote:
Originally posted by Sammi:


I recommend contacting the CEO of your insurance company. Tell him the doctor has deemed the full procedure he wants to do as medically necessary. Explain that further complications could develop if you are not treated properly now.

-
Worth a try!!

DogsNcats... that would be something else!!

Sammy... May the Lord Jesus surround you with his love and care and give you strength. I ask for healing in Jesus' name.

[group hug]

--------------------
--Lymetutu--
Opinions, not medical advice!

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sammy
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That's a great idea DogsandCats! I'd love it if some of you all could be here to be with me to watch the doctors and nurses and help me deal with insurance and stuff...

The mental picture is hilarious though because I imagine you with your dogs and cats too! Would Lymetoo wear her red tutu?

It makes me feel better knowing that you all are here with me in spirit and are praying for me. That is what is most important [Smile]

I think that the procedure is supposed to take about 90min-2hrs tomorrow. I got a little distracted because the doctor started talking about risks next. That is mostly what is stuck in my head.

There is the possibility that an infection could seed in the cement at some point in the future (even years down the road) and the whole vertebrae would have to be removed. I am at higher than normal risk because of my immune disorder and current infections of Lyme and Co's. So terrifying....

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Dekrator48
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Praying for you, dear sammy!!!

Our God is faithful and He will see you through all of this!! [bow]

--------------------
The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.

"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11

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sammy
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*Update 4/17/12*

Oh, I'm freaking out right now. My chiropractor friend called me a little while ago to wish me luck for the procedure tomorrow.

Said he hoped that repairing the worst vertebrae T12 would help reduce my pain. He also wanted to prepare me for the possibility that I would probably still have pain from the other fractures since they were only repairing one tomorrow.

I corrected him and told him that it was my understanding that I was supposed to have 2 vertebrae repaired tomorrow. Apparently, this was what my original doctor had planned. My new doctor, the one doing the procedure tomorrow, the one that I met with yesterday, sent a consult note saying that he only planned to repair one!!!

I tried calling the doctor's office but it was after hours. So now I have to wait until tomorrow morning. It may be too late to change anything at this point if he is truly only planing only one kyphoplasty. They will have only prepared for one procedure.

What a horrible misunderstanding and lack of communication!!!

I am so scared, upset and heartbroken. I can't believe that this is happening. I just want them to please fix my back. Why is that too much to ask?

Thank you so so much for your prayers, I need them more than ever.

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Dekrator48
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Praying again for you, sammy.

I'm so sorry that you are dealing with this lack of communication.

Give it all to God and let Him handle this for you.

It is too much for you to worry about tonight.

God loves you dearly and He will give you the peace you need.

Praying for Him to work out all the details for you.

--------------------
The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.

"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11

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momindeep
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I am with Dekrator...praying with her together for you.

I wish I was there sitting at your kitchen table praying for you and to give you some moral support.

The Lord knows all things...not some things...but everything. So He has a plan for you and He will work this out for your good...He promises that, you know.

In times of great stress, I light a candle to remind me that He is the Light of the world and imagine Him sitting with me right here, right now.

Perhaps you can sit on His lap and tell Him your troubles?

I will ask Him to calm you down.

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fflutterby
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Sammy, I am praying for you. I pray that God will calm you and allow the Dr.s to heal your pain. I pray that you find peace in knowing how much He loves and cares for you.

[group hug]

--------------------
Psalm 46 1 God is our refuge and strength

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Silverwolf
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<<<<< sammy >>>>>,

TxCoord and I will be praying along w/the others here.

Lord, As Sammy awaits the surgery and during the surgery time please keep Your Angels around Sammy, and the surgeons.

We ask for peace and healing for Sammy,and for wisdom for the surgeons. Please keep her wrapped in Your love,and keep the pain eased. Let her have hope and smooth recovery!

Amen!!

Jus'That Silverwolfi

--------------------
2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain.
[ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94
Diabetes*2 Dx 10/'08

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Sammi
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sammy, let's hope the word "one" was a typo. It is possible right?

You believed the doctor said he would be repairing two right? Let's hope for two.

Hang in there okay? Good luck tomorrow. Prayers continue.

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